Caring for the Caregiver

Being a caregiver for someone with a serious illness or chronic condition isn’t easy. There are a multitude of demands on your time, energy, and resources (and in the privacy of your own mind, you might even amend that to too many). Between doctors’ appointments, dispensing medication, helping the ill person complete daily tasks, managing the ill person’s household, providing meals, and more, it’s all too easy to feel overburdened, overstressed, and overwhelmed.

That’s why Walter St. John, Ed.D., says it’s so important for caregivers to develop healthy and habitual coping mechanisms.

“Even when the ill person is someone whom you love deeply, such as a spouse or parent, being a caregiver puts you under a tremendous amount of mental, emotional, and often physical stress,” points out St. John, author of Solace: How Caregivers and Others Can Relate, Listen, and Respond Effectively to a Chronically Ill Person. “And it’s not always possible to, as the popular saying goes, ‘keep calm and carry on’ while avoiding negative repercussions.”

As a result of the constant stress they’re under, caregivers often suffer from fatigue, insomnia, anxiety, depression, chronic pain, a lowered immune system, and much more.

“Because they are so focused on meeting the needs of another individual, it’s common for caregivers to put their own well-being on the back burner,” St. John explains. “But in the end, ignoring your own needs, wants, frustrations, and health has a negative effect on you and on the ill person. It’s very important for you to be aware of what your mind, body, and emotions are telling you, and to have coping mechanisms in place to help you manage stress and maintain your sanity while still meeting the needs of the ill person.”

Here, St. John shares ten healthy ways for caregivers to effectively cope with stress:

Have realistic expectations for yourself. When many people take on caregiving roles, they have unrealistic expectations regarding how much they’ll be able to do, what their relationship with the ill person will be like, what type of attitude they’ll have, and so much more. And when reality doesn’t match these ideals, negativity, conflict, stress, and disappointment can result.

According to St. John, that’s why it’s so important not to set your self-expectations too high.

“First of all, learn to accept what you cannot change and focus only on the things that you can change,” he advises. “Also, realize that you cannot give what you do not have, so know your mental and physical limits, and be aware of your personal limitations regarding your availability to care for the ill person. You must know when to step back to recharge your energy batteries; in fact, setting healthy boundaries is best for you and for your ill loved one. Just be sure to explain your time and availability limitations to the person for whom you are caring in order to avoid misunderstandings.”

Obtain advice on caregiving from experienced caregivers. The good news is, you’re not alone. Others have been where you are today, and even if your situations don’t match exactly, they can still share valuable advice and insight on your new role.

“There are so many sources of help and guidance to which you can reach out,” points out St. John. “They include, but are certainly not limited to: friends or relatives who have acted as caregivers, the ill person’s medical team (e.g., doctors and nurses), clergy, social workers specializing in caregiving, and nursing home professional staff. Furthermore, there may be caregiver support groups in your area, and they can certainly be found online. I promise, it’s much better to learn various coping techniques in advance from experienced caregivers, rather than learning them the hard way through trial and error.”

Accept that as a caregiver, you need help. One person cannot do it all, especially in an intensive caregiving situation; in fact, you should try to have at least two other people to help you. With that in mind, tell your family and friends what you need and how they can assist you as soon as possible. Be sure to explain the level of commitment required as well as the accompanying time demands in order to secure their full support and understanding.

“I suggest writing down the kinds of help you will require and giving copies to the appropriate people,” says St. John. “And in addition to providing these general guidelines, don’t hesitate to ask for help with specific tasks or responsibilities whenever you need it. Especially if you foresee yourself and your ‘team’ of helpers becoming stretched thin, consider taking the ill person to a daycare center several times a week. Remember, there is no shame—and a lot of good sense—in sharing the caregiving duties and responsibilities as much as is possible and practical.”

Control the caregiving situation, rather than letting it control you. Even though you have volunteered to take care of someone else’s needs, you are not at the mercy of or under the complete control of the ill person. Rather, you have the right and responsibility to make yourself understood; to ensure that your own needs are being met; to protect yourself from excessive stress, physical and mental strain, and even abuse.

“In other words, you don’t have to passively ‘take’ everything the ill person and others involved might throw at you,” explains St. John. “Yes, there will be some non-negotiables (for instance, medication might need to be taken at a certain time each day no matter what), but other aspects of your responsibilities and routine will be up for negotiation. Be proactive, rather than reactive, by securing agreement on ground rules of conduct when your caregiving begins.”

Make every effort to still live your own life. When some individuals become caregivers, they consciously or unconsciously push the “pause” button on their own lives. They may stop spending time with their own friends and family, cease to participate in hobbies and activities, and completely rearrange their schedules in order to best care for the ill person. When you allow your entire life to revolve around your ill loved one, your mental health, physical health, relationships, and more can suffer.

“Do your best to balance your previous life activities and routines with the newer demands of caregiving,” recommends St. John. “Never forget that you still have your own life to live. Be empathetic with the ill person regarding his or her personal problems (i.e., those that don’t relate to his or her health, medical care, and immediate needs), but refrain from making these problems your own. You can’t—and shouldn’t—own the ill person’s problems. This is not only impossible, but unhealthy.”

Insist on some private time each day. Time to yourself may suddenly become a luxury. Many caregivers find that there are more than enough tasks to keep them busy throughout every waking moment of the day. But for the sake of your own mental, emotional, and even physical health, it’s crucial that you set aside time to take care of your own needs and desires.

Keep mentally and physically fit. The truth is, you’ll be best equipped for the responsibilities and demands of caregiving if you maintain your mental and physical health. (If you don’t, expect to deal with issues ranging from a lowered immune system to depression!) Here are some of St. John’s suggestions:

Eat balanced, nutritious, stress-free meals at about the same time each day.

Get adequate sleep on a regular basis.

Take several brief rest periods daily.

See your doctor promptly when you need to.

Schedule periodic medical examinations.

Beware of too much self-medication (e.g., taking tranquilizers).

Get lots of exercise regularly.

Learn to say no. If you’re around someone who’s ill, demands will be made of you. That’s normal. Especially if you’re a caregiver, you’re agreeing to do things the sick person can’t handle himself. It’s crucial to understand, though, that you can’t say yes to everything. While you may be the “healthy one,” you still have physical and mental limits. And when you try to be everything to everyone, you’ll end up stretching yourself too thin, and perhaps even harming yourself or the ill person.

“It is much better to respond with a responsible no as opposed to an irresponsible yes,” says St. John. “It especially does not mean that you are weak or selfish. Just be sure to deliver your response with love. Explain your reasons and reaffirm how much you care for the ill person.”
Encourage the ill person to do as many things for himself or herself as he or she can without overdoing it. In all but the most extreme cases, he or she will still be able to complete some tasks on his or her own. Try to identify what your loved one can handle without becoming overwhelmed and exhausted (some examples might include paying bills, folding laundry while seated, and sorting medication), and then encourage him or her to take on these jobs.

“You’ll be helping both the ill person and yourself,” says St. John. “There’s no need to tax yourself with unnecessary effort; chances are, you have enough on your plate to begin with. Meanwhile, the ill person will still feel in control of his or her own life. In general, a good attitude to have is: I’m willing to help you as little or as much as you want me to, but I won’t do things for you that you prefer to do for yourself.”

Know ahead of time what to say or do when your patience becomes exhausted. There’s no doubt about it: Caregiving is stressful. Some days you may become frustrated because the ill person is angry and rude (when this happens, keep in mind that seriously ill people have a lot to feel upset about!); other days, the constant demands of caregiving might weigh heavily enough that you reach the end of your rope. On such occasions, do what is necessary to remain cool and collected, even if you have to pause for a few seconds or leave the room. You can’t always control the ill person’s behavior, but you can control your own response.

“When you’re out of patience, it is best to simply say, ‘I’m sorry—I need to leave now, but I’ll be back later,’” shares St. John. “This approach is preferable to your remaining on the scene and showing anger or, worse yet, saying something in the heat of the moment that you’ll regret later.”

“The bottom line is, you need to take care of yourself first if you want to effectively care for the ill person,” St. John concludes. “Sacrificing yourself unnecessarily doesn’t do anyone any good. And remember, it’s okay—and encouraged!—to spend time on yourself.”

About the Author: Dr. Walter St. John is a retired college professor and administrator who lives with his wife in Old Town, Maine. He has hands-on experience with disabled veterans, multihandicapped youth, and Special Olympics participants, and he has written widely in the field of communications.

Frances Reeves served as a lieutenant in the Women’s Army Corps in WWII, is the mother of five children, including well-known PBS gardening expert Walter Reeves, and is very active in Fayette County, Ga. community

The United Way of Metropolitan Atlanta recently recognized Joan Neal as Fayette County’s longest loyal contributor to United Way. This award is a long line of “firsts” for this Fayette County resident who pioneered for the expansion of our education system and championed for great causes such as the county’s first hospital and new senior […]